Being Apart
This weekend, we have the honor of attending one our best friend’s wedding in Montana. While Dave (the Best Man), and Eva (the flower girl) have been there since Thursday for the rehearsal, I am heading out today (Saturday) so that we only leave the other girls (Livvy specifically as she is the most medically…
When Kindness & Compassion Make History
Today, we helped make history. Albeit, a small part. But it will save the life of a girl diagnosed with MLD. And to me, that is everything. Just days ago I was informed of a 4-year-old girl from Alabama who was diagnosed with the juvenile form of Metachromatic Leukodystrophy (MLD) – the same disease, but…
Enrolling in Hospice
Last week, we enrolled Livvy in Hospice of the Valley. Not because she is drastically and rapidly declining, but more so to have that support system in place for when she does and in order to have physicians come to her rather than putting her in her stroller and driving anywhere (she has always hated…
When Tragedy Results in Research
One part of our story that some people don’t know is that Dave and I both got genetic testing done prior to having kids. Not because we knew of any issues in either of our family; simply because my doctor was offering it and we figured why not? Better safe than sorry. 100+ rare diseases…
Loss of Timeline
When you become a parent it’s almost automatic to write down the dates of your children’s milestones. Rolling, sitting, walking, talking, running, etc. But when they have a terminal illness like MLD, you begin to avoid those dates because it generally means loss of milestones. Looking back at my notes, I did not put a…
A Sigh of Relief
After about 6 weeks from returning from Keira’s check up in Italy, we finally got the results of the very last test we were waiting on – the main test we went there for because it cannot be done in US labs – to see if her body was still creating antibodies to the ARSA…
Advocating for Your Special Needs Child
Rod Paige (the 7th United States Secretary of Education) once said “There is no more powerful advocate than a parent armed with information and options.” Now, as a special needs parent, I fully understand the truth in this quote. Yes, every parent must know that part of their job is advocating for their child. It’s…
Med Changes and Eye Gazes for Livvy
It has been a while since I posted. Mainly because it has been a busy month for all of us and one of many ups and downs for Livvy. While Dave and the girls were in Italy, Livvy started having these random bouts of pain that were inexplicable. Nothing looked like it was physically or…
Livvy’s Wish Came True
Today, thanks to the wonderful souls over at Make A Wish Arizona, Livvy’s wish came true – after only requesting it a few short weeks ago – and she was so happy! If you saw my previous post, you know it was a swing set for her to enjoy with her sisters. And while parts…
Results from Keira’s 6-Month Post GT Check Up
On May 11th, Dave, his Mom, Eva and Keira returned from a two week trip to Milan, Italy for Keira’s six month check up after the gene therapy she received in October 2020. I stayed home with Livvy since the travel, time changes, etc. would have been too hard on her. And let me tell…
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